I rarely post, although have lurked for years, but I had to add my sympathies to your DD and hope that it all goes OK. I was also at GOSH MaxFax today with my DS who is 10. We also discussed the same surgery but with a view to do it just as puberty starts aged 12/13. How old is your DD? We were meant to do a distraction first as well but unfortunately DS got diagnosed with arthritis in the TMJs so we have had to hold off for a while.I will be very interested in how this all goes for you as I don't know anyone else who has had it done.

Well it's invasive certainly, but the post surgery recovery will be better as there isn't anything that needs to come out again. Hopefully less scarring too. The funny thing is that I hated biology at school, avoided dissections yet I am now well qualified in all things Treacher Collins.

That's kind of you Lisa123. It looks like we are going to be doing a different type of surgery to what was originally planned. She won't be having a jaw distraction which is where they break the jaw, put pins in and lengthen it every day by turning screws. Horrible surgery. We've done it twice already. This time they are going to be reconstructing her Trans Mandibular Joints (TMJ) by grafting rib bone and cartilage and also using hip bone. So she will have to wait until the summer for it to be done, and will have to wear a bite block for eight weeks to keep the area stretched. Lots to think about.

Thanks ladies. Its chaos here today. dS3 announced ten mins before leaving for school that it was non uniform day and the school want Xmas food for hampers. DS dispatched with Choccie dodgers expiring on the 15th Dec. grandma bought them for the kids months ago, and they've been festering in the cupboard until today!

Off to GOSH today to see DD's (she is 13 next month) new craniofacial surgeon, to discuss his proposed jaw distraction surgery; vectors that he'll use, internal or external distractors, what the outcome should be etc. it's complicated as we've been here twice before with her over the years.

So a little honk please ladies, this will be her 27th surgical procedure and it really doesn't get easier the longer you do it for. Thank you x